Germ cell ovarian tumours

Germ cell ovarian tumours begin in the ovarian cells that develop into eggs (germ cells). They are rare and usually affect people up to their early 30s.

You usually have surgery to remove the tumour. You might have chemotherapy if your tumour is cancerous. Treatment usually works well and most women are cured.

Types of germ cell tumours

There are different types of germ cell tumour. They can be non cancerous (benign) or cancerous (malignant).

Benign germ cell ovarian tumours

Mature teratomas are the most common type of ovarian germ cell tumour. They are non cancerous (benign). Mature teratoma is also often called an ovarian dermoid cyst.

They are most common in women during their teens to their forties.

Malignant germ cell ovarian tumours

These tumours contain cancer cells. There are different types including:

immature teratomas
dysgerminoma
yolk sac tumour
non gestational choriocarcinoma
embryonal carcinoma

Symptoms of germ cell tumours

Symptoms might include:

pain in your tummy (abdomen) or lower part of your abdomen (pelvis) that doesn't go away
a lump in your abdomen
bloating or an increase in the size of your abdomen
irregular periods, or vaginal bleeding after your periods have stopped

Diagnosing germ cell tumours

Doctors use various tests to diagnose ovarian germ cell tumours. These might include:

an ultrasound
blood tests – germ cell tumours often produce chemicals or hormones (tumour markers) that doctors can measure in the blood
CT scan
Chest x-ray
MRI scan

Grading and staging of germ cell tumours

The grade and stage of your cancer is very important. They help your specialist to decide what treatment you need.

Grade

The grade describes how the cells look under a microscope. The less developed the cells look, the higher the grade.

There are 3 different grades – grade 1, grade 2 and grade 3. Generally, grade 1 cancers are the slowest growing and least likely to spread. Higher grade cancers grow more quickly.

Your doctor might also describe your cancer as low grade (grade 1 cancers) or high grade (grade 2 and 3 cancers).

Stage

The stage of a cancer tells you how far it has grown. For ovarian germ cell cancers, doctors use the same staging system that they use for other types of ovarian cancer. There are 4 stages, from 1 to 4:

stage 1 means the cancer is only in the ovary (or both ovaries)
stage 2 means the cancer has spread into the fallopian tube, womb, or elsewhere in the area circled by your hip bones (your pelvis)
stage 3 means the cancer has spread to the lymph nodes or to the tissues lining the abdomen (called the peritoneum)
stage 4 means the cancer has spread to another body organ some distance away, for example the lungs or liver

Treatment for germ cell tumours

Treatment depends on your type of germ cell tumour. It also depends how far it has grown (the stage) and what the cells look like under the microscope (the grade).

The main treatment is surgery. You might need chemotherapy if your tumour is cancerous.

Non cancerous (benign) germ cell ovarian tumours

Your specialist surgeon (gynaecologist) removes the ovarian cyst. Or rarely the whole of the affected ovary. They leave the other ovary. As most women with mature teratoma are young, doctors are aware that they may want to have children in the future. So they remove as little tissue as possible.

Surgery usually cures benign tumours and you don’t need any further treatment.

Cancerous (malignant) germ cell ovarian tumours

You have surgery to remove the cancer. This might be the only treatment you need. The doctors keep a close eye on you to check for signs of the cancer coming back. This is called active surveillance.

You might also need chemotherapy. This depends on the type, stage and grade of the cancer.

Some women may have radiotherapy to their whole abdomen area. This is if the cancer has spread or come back.

Types of treatment

Surgery

The surgery

The surgeon (gynaecological oncologist) removes the affected ovary. They usually leave your other ovary. As most women with ovarian germ cell cancer are young, doctors are aware that they may want to have children in the future. So they remove as little tissue as possible.

During the operation, the gynaecologist examines the inside of your abdomen for signs of cancer. They may take biopsies and send them to the laboratory to look for cancer cells. Your gynaecologist also washes out the inside of your abdomen. They send the fluid to be checked for cancer cells. This helps to make sure that the cancer hasn't spread.

Your gynaecologist will remove some or all of the cancer if it has spread beyond the ovary. This depends on where it is. It’s not uncommon to have cancer cells left behind.

After surgery

Your doctor will talk to you about whether you need chemotherapy after surgery. This depends on several factors. Surgery might be the only treatment you need if you have:

stage 1A dysgerminoma
stage 1A grade 1 immature teratoma

If you don’t have chemotherapy your healthcare team keeps a very close eye on you. This is to check for signs of the cancer coming back. This is called active surveillance.

Further surgery

Rarely, you might need to have a second operation after chemotherapy if there is any sign that the cancer is still there.

During the operation, the gynaecologist removes any cancer left behind. The type of surgery depends on where the remaining tumour is. Your gynaecologist will be able to explain exactly what is involved if you need an operation.

Chemotherapy

You might have chemotherapy after surgery. Germ cell cancers can often be cured with a combination of surgery and chemotherapy even if they are advanced.

You may have chemotherapy before surgery if you have advanced cancer.

The most common combination of chemotherapy drugs used is BEP. This stands for the chemotherapy drugs bleomycin, etoposide and cisplatin. This combination is very good at preventing germ cell cancers from coming back.

Radiotherapy

Rarely, you might have radiotherapy to try and shrink the cancer and reduce the symptoms of advanced ovarian cancer. This is called palliative radiotherapy.

Follow up

After you've finished your treatment, your healthcare team will see you regularly. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything. You might also have tests at some visits.

Tests may include:

a physical examination
blood tests
ultrasound scan
chest x-ray
CT scan

Your see the doctor more often if you have a cancerous tumour and you don’t have chemotherapy. This is called active surveillance. It aims to detect any sign of the cancer coming back.

Your doctor monitors you for 10 years after diagnosis. You have tests and see the doctor frequently over the first year. The monitoring becomes less frequent as time passes.

It’s very important that you keep up with these appointments. Your doctor will tell you more.

Getting pregnant after treatment

Your doctor might advise you to avoid getting pregnant for 2 years after diagnosis. This is because if the cancer is going to come back, it usually does so in the first 2 years. Talk to your doctor about this as the advice will depend on your individual situation.

Research and clinical trials

There may be fewer clinical trials for rare types of cancer than for more common types. It is hard to organise and run trials for rare cancers.

There are some clinical trials for people with germ cell tumours. You can read more about these on our clinical trials database by searching for germ cell tumours.

Coping

Coping with a diagnosis of cancer can be difficult, both practically and emotionally. It can be especially difficult if you have a rare cancer. Being well informed about your cancer and its treatment can make it easier to make decisions and cope with what happens.

Talking to other people who have the same thing can help. But it can be hard to find people who have had a rare type of cancer.

Cancer Research UK’s discussion forum is a place for anyone affected by cancer. You can share experiences, stories and information with other people who know what you are going through.

Or contact the Rare Cancer Alliance who offer support and information to people who have rare cancers.